CHD Awareness Week 2015

Last Year we were told our baby had a serious form of CHD (Congenital Heart Disease) during that time Avicii had this song out – “Wake me up” – The words became our theme song, the one we would crank up on the way back from every fetal medicine appointment…all we had to go off was her beating heart, it guided us to fight for her life, fight for her care, fight to know her. We never knew what the outcome would be, we never knew then she was the 6% caused by a (lethal?) chromosome abnormality. The Drs told us we were dreaming, we didn’t get it, but as long as my heart warrior fought, then as her mother I would fight too. At times it was like a dream but unfortunately the weight of this diagnosis was our reality:

Feeling my way through the darkness
Guided by a beating heart
I can’t tell where the journey will end
But I know where to start

They tell me I’m too young to understand
They say I’m caught up in a dream
Well life will pass me by if I don’t open up my eyes
Well that’s fine by me

So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don’t have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life’s a game made for everyone
And love is the prize

PicMonkey Collage

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